Tuesday, 12 April 2016

I managed to live with Joint Hypermobility Syndrome for nearly 26 years without prescription medication. I was never not in pain, but I managed by taking over the counter painkillers, and usually only occasionally, because being in pain was pretty much the main factor of my life. So I managed.

Until I couldn't. Now I take fairly strong prescription painkillers in combination with several over the counter ones, and I take a regular medication which helps with nerve pain, among other things. A few weeks ago, I miscalculated how long it would take for my repeat prescription to be issued, and how much medication I had left, and this meant I went without that medication for a day and a half.

A day and a half, you're probably scoffing. It sounds pathetic, right? But this is a medication I take 3x a day, and it has a very short half-life, so by the time I come to take the next dose, the previous one's effects are wearing off.

So I missed 4 doses. The first day I was exhausted, the kind of tiredness that sits in your face. I'd slept well and for about 10 hours the night before, so I was pretty pissed off. I could feel the tiredness sitting on me all day, like a very heavy and persistent cat. I went swimming as I usually do on a Tuesday, and it wasn't until a bit later that I finally put all the pieces together. I hadn't had any Gabapentin and I was feeling worse than usual.

It got worse. By that evening I was so tired and in so much pain that I could barely lift my fork to my mouth. My boyfriend ended up washing and drying my hair for me, and I took 2 full doses of painkillers, that's 6 tablets, 4 hours apart, which I try to avoid doing as much as possible. I didn't sleep. I was shaking and I was aching all over.

I got the prescription the afternoon of the next day and 3 doses later, was feeling more or less normal. It was interesting, in a way. I knew the Gabapentin was helping with my pain; I'd felt a definite decrease in a certain type of pain I experience, and that had led to me being able to take less actual painkillers. Just before I started taking the Gabapentin I'd been having muscle twitches almost constantly and sometimes all over my body. Nothing I did or took stopped them, except the Gabapentin. As soon as I took the first dose, they almost totally stopped. So I knew it was helping in those ways, but I hadn't realised how much it was helping, until I didn't have it.

It's also, I now realise, pretty much the only reason I can work right now. The Caitlin pre-Gabapentin was not in an employable state. The Caitlin on Gabapentin is doing alright. She isn't doing cartwheels or planning to run a marathon, but she can work part-time and she can exercise. She can build her muscles up to help them with supporting her joints, which should lead to less pain, less discomfort, less fatigue and a better quality of life.

There are people out there who think people like me shouldn't take medications like I take. They call us addicts for needing opiods to get through the day. I recently had an unpleasant appointment with a locum doctor who told me he had a cousin with Joint Hypermobility Syndrome and that I was too young to be taking the medications I'm taking, that I should manage my condition through lifestyle changes and, occasionally, if I really needed it, take Paracetamol. I was shocked and not shocked. Shocked because I've never had an interaction like that with a GP. I've asked several of them for the strong painkillers I'm on, and none of them have said no. But I wasn't shocked because I know this happens. People have these opinions. They have cousins, friends, aunts who manage without medical interventions so I should be able to manage too. I know it's possible to have my condition and live without prescription medication because I did it. I did it until something changed which meant I couldn't do it anymore. Not everyone is affected by health conditions, by illnesses, in the same way. Not everyone has the same symptoms and not everyone is able to deal with those symptoms the same way.I've made lifestyle changes. I quit my job and I got a less stressful one working less than half the hours. I moved back in with my mum. I scaled my social life right back and I'm more mindful of what activity I do and what effect it will have. I eat better than I used to, which was appallingly. And I exercise. I exercise 3 times a week. But I couldn't do any of that without the medications I take. Without those medications, I would probably be mostly bed-bound which is not my definition of managing my condition. People can be judgemental of medications as much as they want, but I hope those people are never in the position of relying on them like I am. And if they are, I hope they aren't made to feel bad for taking them.

3 comments:

Beautifully put! I take regular strong medication because of my EDS & migraine (which I loose consciousness with). This medication gives me a quality of life back, but I still experience judgement from people. My Nan used to be fine with my cousin taking medication for her epilepsy, but had an issue with me taking it for my migraine. She didn't think I needed it - the top consultants in the country would very much disagree with her opinion, but that didn't change her thinking! I've recently come off the majority of my medication I take for my migraine & EDS. My pain has increased massively & has contributed to me needing to use crutches & a wheelchair. Yet I also have people telling me I'm 'too young for a wheelchair'. I feel like I can't win! I'm very lucky that the people around me are very supportive (my Nan is no longer with us), so I don't have to experience people's ignorance often. I hate to think how people who have to hear things like this on a regular basis feel. It must be heartbreaking not being understood. Xx

Couldn't agree with you more!! I needed the pain medications I'm on now for a long time before I got them, and it was torture.. My pain is still excruciating at times, the meds don't stop the pain flares, but I'm better able to manage my pain without outside intervention, and my meds help to keep my background pain level bearable, so that I actually have some quality of life! Some doctors in hospital thought I was over medicated for my size and age, but when they tried to reduce them, it left me literally rocking and squirming in agony- they put me on more meds for pain than when I went in in the end! And my pain (that I'd been told 'nothing more could be done') was finally at a level I could cope with day-to-day, after months of being worn down by its constant severity. Nobody should be left in agony- the medications are there for a reason; we're sensible enough to make our own decisions (with the help of our doctors) about the risks vs the benefits. Years ago, the thought of my medication regime now would have terrified me, but now I'm just grateful that I have the medications I need to make my pain manageable! Thanks for writing this ���� xx